Christiane Geuer, a living kidney donor in Germany, sent me information about a television broadcast she worked her butt off to make happen. As expected, the actual broadcast is in German, but the following also includes a rough translation/transcript of the program:
[Note: Not so long ago, a living donor zealot from Europe tried to tell me that Europe’s livng donation system was superior to America’s for a number of reasons. I concurred that universal health care would make a difference, at least assuring that living donors could seek out preventative treatment, but that it wasn’t the perfect situation she thought. I provided examples from the literature, as well as from European living donors I spoke with. Her response was to bare all teeth and claws, attacking the United States (really?) as well as me personally. My hope of all hopes is that she somehow sees this broadcast]
Title: Why living kidney donors are not informed about dangerous long term consequences.
“Young sporty donors declare that after a living kidney donation they do have a lot less physical stamina. One of the donors could no longer perform her job.
Is there a connection between donation and fatigue and less physical stamina?
Leading German transplant surgeons do consider this consequence as unlikely.
REPORT MAINZ has discovered many medical studies give other information. E.g. the medical university Hannover found that 26% of all donors do complain about reduced physical stamina one year after nephrectomy. A unique data collection in Switzerland found a similar outcome.
Although Professor Gilbert Thiel did not ask the donors explicitly for fatigue, 8% of all donors complained about fatigue. Thiel presumes that the estimated number of undetected cases is higher and demands that all living kidney donors need to be informed about this risk.
The two donors who were questioned by REPORT MAINZ assure that they were not informed about this fatigue. Both are filing a suit against the transplant clinics.”
Content of the XL Version (Just roughly):
“Donor Christiane Geuer, the 32y.o. lady, was extremely fit until 4 years ago physically and mentally.
CG: I was full of energy, played high performance sports. In summertime I was wakeboarding on the lake for hours, I was doing skatemarathons of 140 kilometres, climbing and hiking in the Alps. In wintertime I was snowboarding and was full with energy, sometimes I didn’t know what to do with all this energy.
Hospital scene:” 2007, Christiane Geuer donates a kidney to her sick mother. Christiane Geuer insists the doctors had assured her that she could continue her normal life after donation. But in reality she paid a high price for it, professionally and privately. “
CG: “It developed step by step. aA the beginning you think you are tired and everything goes slower because surgery is not so long ago. But after half a year I noticed that something is different now. I needed a lot more sleep, I was tired a lot quicker and as soon as I started working again, it became really tough. I could not speak of professional efficiency.”
ATC pic: “Before the donation CG worked as an air traffic controller. A profession that demands highest concentration and does not excuse any mistake. “
CG: “I no longer work as air traffic controller. I tried to do the job again for over two years, but it did not work at all, there was no normal life any more. That was simply nightmarish. It nearly happened that two aircraft had a nearmiss and it became obvious that this was it. That was the clear signal that this job came to an end for me. “
Speaker: “In comparison to pre-donation she describes that she has had a massive impact on her performance. “
CG: “Now, with working only part-time (35%) I maybe have 50% of my former energy. And with sports maybe half of it. “
Speaker: “And the consequences of donation are visible for the mother”
Mother HG: “It is an incredible high price which she (my daughter) has to pay, so that I can feel healthy as never before in my life. “
Speaker: ” 2010 nearly 700 people donated a kidney to close relatives in Germany, in most cases there are no complications, but more and more donors complain about a reduced physical stamina after donation.
As this young woman: “The 41year old donor is chonically exhausted, suffers massive concentration problems. One year ago she donated a kidney to her husband. She wants to stay anonymous as she fears losing her job. “
Donor 2: “I was full with energy before donation, I loved to do as much as possible every day and now I became 20 years older within one single day. And it does not improve, energy and performance ability stay low. I am just tired. And this fatigue. if I should compare it to anything, it is as if you hadn’t slept for two days in a row. I can remember that I stood in the bakery and did not know how to select 60 cents out of my purse. I forget simple wordings. I work with numbers so it is especially hard for me to work with enough concentration when being so tired.”
Speaker/Car in front of clinic:
“What do Germany’s leading transplant surgeons say to this accusation? We visited the transplants surgeron congress 2011 in Munich. Professor Jurgen Klempnauer, Medical University Hannoverm has transplanted hundreds of kidneys. And Professor Peter Neuhaus from Charite in Berlin is a international well known transplant surgeon.”
Peter Neuhaus: “I would know if there were kidney donors who have less physical stamina or any other disturbance”
Prof. Klempnauer: “That such a fatigue syndrome is being caused by kidney donation is unlikely. “
Question: “And is also the actual state of science?”
Prof Klempnauer: “Yes, this is the actual state of published science”
Speaker: “REALLY? We researched for a couple of months and indeed, the reduced physical stamina is reported in quite a number of studies. For example one study from the medical university Hannover, thus Klempnauers own clinic (!!!), reported that 26% of all donors complain about reduced physical stamina and performance one year after donation.
After confrontation with these facts, Klempnauer admits:”that one quarter of all donors complain that physical stamina and performance is reduced since donation, is alarming. And needs further analysis.”
Speaker: “We drive to Switzerland, Basel. We know that for eighteen years there is a unique data collection of all donors in Siwtzerland. The team around Professor Gilbert Thiel asks all donors every two years for their present state of health. That is the only study of its kidney world-wide”
Prof. Thiel: “We send questionaires to all donors about their social status, asking if they suffered any disadvantages after kidney donation. And to my surprise there have been some donors who report that they encounter fatigue since donation. “
Speaker: “Although Prof. Thiel did not ask individually for fatigue, 8% complained about fatigue. And, in medicine, this counts as common. REPORT MAINZ received these results exclusively.
Prof. Thiel: “For me this is surprisingly common. I did not expect this. But I know that these donors were not tired before donation.”
Speaker: “Once again: Prof Thiel did not ask for fatige complaints, but still donors complained about fatigue.
Question: So we can assume that there ist still some possibility for a higher estimated number of undetected cases?
Question speaker: “Is there a need for prospective donors to be informed about this fatigue prior to surgery?
Thiel: Absolutely!!! There is no doubt for me about this!!
Speaker: “Christiane Geuer assures that she has not been informed about these consequences, the fatigue syndrome. The same thing happened to the other donor.
Is this the common practice in Germany? “
Prof. Klempnauer: We do inform about long-term psycho-social restrictions. But we cannot mention every little consequence.
Question: “So fatigue syndrome is not mentioned?”
Prof Klempnauer: “Not as fatigue syndrome as a single complication”
Prof. Neuhaus: I am personally very convinced that there is no connection between donation and these consequences. Therefore I would only frighten the patients and potential donors if I informed them. And I do not deem this right.
Speaker: Christiane Geuer filed a suit against the transplatnation clinic because of wrong informed consent. Also the other donor will file a suit. What does the law say? Prof Schreiber, lawyer, was also responsible for writing the present valid transplantation law.
Prof Schreiber: All risk that might have an impact on the donor and all risks concerning the health status must be included in the informed consent.
Question: If they do not mention all risks to donors, is this a contravention of law?
Prof. Schreiber: This provides the reasons for liability.
Speaker: Since donation, life has changed a lot, basically and existencially.
Donor 2: I am not deluded, my husband will not be able to work full time till old-age pension. So it would have been important that I can work as long as possible. But my job is in danger. I do not know if I can work like this forever because on so many days I feel so awfully bad.
Donor 1, Christiane Geuer: I tire a lot quicker, my stress resistance is a lot less and in sports I can do just tiny parts of what I used to do before. I am more sensitive to anything, my immune system is more prone to diseases and infections. I stay in bed for whole days in order to recharge my batteries. There is a difference like day and night!
Speaker: Christiane Geuer together with her mother. The mother feels good with the kidney, very good.
Conclusion: Kidney donation help very sick patients, but donors need to be fully informed about all the risks involved. And there is a great need for change in Germany.